Ese uruhu rwawe rushobora kwibasirwa cyane n'izuba? Ibi bishobora kuba (Xeroderma Pigmentosum - XP)!

Uyu munsi tugiye kuvuga ku ndwara y’ubuzima izwi cyane ariko ikomeye cyane. Ese wigeze ubona uburyo bamwe batwikwa n’izuba ndetse no gutukura nubwo baba bamaze kurwara izuba gato? Hari igihe ibi bibaho no ku bana bato. Impamvu imwe ishobora gutera ibi ni indwara yitwa Xeroderma Pigmentosum , cyangwa XP mu magambo ahinnye. Uyu munsi turaganira gusa ku kibazo cyayo, impamvu ibaho, n’uko twayihanganira.

Ibi (XP) bisobanura iki? Reka dusobanukirwe neza!

Mu magambo make, Xeroderma Pigmentosum (XP) ni indwara idakunze kugaragara mu maraso . Iyo wumvise ijambo "genetique", ushobora gutekereza ikintu nk'iki. Ni ukuvuga ko ari ikintu dukomora ku babyeyi bacu, cyangwa bombi. Abantu bafite iyi ndwara bafite uruhu rworoshye cyane ku mirasire ya ultraviolet (UV) ituruka ku zuba. Mu by'ukuri, uruhu rwabo rugorwa no kwinjiza iyi mirasire ya ultraviolet.

Ubusanzwe, ibimenyetso by'iyi ndwara (XP) bigaragara ku bice by'umubiri bikunze kugaragara ku zuba. Urugero, ku maso, ku maboko no ku minwa . Akenshi, ibi bimenyetso bitangira kugaragara akiri muto, ni ukuvuga mu bwana . Tekereza, n'umwana muto ashobora kugaragara ku zuba mu minota mike gusa, maze uruhu rwe rukamera nk'urumuri no gushya (ubushyuhe bw'izuba bukabije).

Ese kanseri (XP) ni ikibazo abantu benshi bibaza!

Oya, XP si kanseri itaziguye . Ariko dore ingingo y'ingenzi. Umuntu urwaye XP afite ibyago byinshi byo kurwara kanseri y'uruhu kurusha abandi.

Nubwo iyi ari inkuru iteye ubwoba gato, ni ngombwa kuyimenya. Reba iyi mibare:

• Umuntu urwaye XP afite amahirwe menshi yo kurwara kanseri y'uruhu idafite melanoma inshuro zigera ku 10.000 , nka kanseri y'uruhu ifata uturemangingo tw'ibanze cyangwa kanseri y'ururenda rwa squamous, kurusha umuntu usanzwe.
• Nanone, ibyago byo kurwara melanoma, kanseri y'uruhu ikomeye, byikubye inshuro zigera ku 2.000 .

Uretse izi kanseri z'uruhu, hari ubushakashatsi bwagaragaje ko abantu barwaye XP bafite ibyago byinshi byo kurwara izindi kanseri. Urugero:

• Ibibyimba byo mu bwonko (Astrocytoma) , (Glioblastoma)
• Kanseri y'ibere
• Kanseri y'impyiko
• Leukemia
• Kanseri y'ibihaha
• Kanseri y'impyiko
• Kanseri y'igifu
• Kanseri y'intanga
• Kanseri ya tiroyide
• Kanseri yo mu mura

Uru rutonde ntirugutere ubwoba. Si kanseri zose zizarwara buri murwayi (XP). Ariko, ni ngombwa kumenya ingaruka zishobora gutera.

Iyi ndwara ikunze kugaragara gute?

Xeroderma Pigmentosum ni indwara idakunze kugaragara cyane . Bivugwa ko umuntu umwe gusa kuri miliyoni imwe mu bihugu nka Leta Zunze Ubumwe za Amerika n'u Burayi ari we ufite iyi ndwara (XP).

Ariko, ikunze kugaragara cyane mu bice bimwe na bimwe by'isi. Urugero, mu Buyapani, iyi ndwara yibasira umuntu umwe kuri 22.000. Ikunze no kugaragara muri Afurika y'Amajyaruguru no mu Burasirazuba bwo Hagati. Nubwo nta makuru nyayo agaragaza ko ikwirakwira muri Sri Lanka, ifatwa nk'indwara idasanzwe.

Ni ibihe bimenyetso bya (XP)? Reka tubisobanure!

(XP) Ibimenyetso bishobora gutandukana bitewe n'umuntu, ariko bigira ingaruka cyane cyane ku ruhu, amaso, n'imitsi .

Ibimenyetso by'uruhu

Ibi ni byo bimenyetso bikunze kugaragara:

• Gutwikwa n'izuba: Nubwo umuntu yamaze igihe gito atwikwa n'izuba, uruhu rwe rurashya kandi rurashya.
• Uruhu rwumye kandi rworoshye (Xerosis): Uruhu rwumye cyane, kandi rushobora kuba rworoshye nk'impapuro zo mu bwoko bwa parchment.
• Udukoko tw’umukara (Lentigos) mbere y’imyaka 2: Ubusanzwe, abana bato ntibagira udukoko tw’umukara hakiri kare.
• Uduce tw’uruhu twiyongera kandi tukagabanuka (Poikiloderma): Uduce tumwe na tumwe dushobora kuba dufite umukara, mu gihe utundi dushobora kuba dufite umweru.
• Kugabanya uruhu (Atrophy).
• Imirongo itukura ku ruhu iterwa no kwaguka kw'imitsi y'amaraso - Telangiectasia: Igaragara nk'imirongo itukura kuko imitsi mito y'amaraso igaragara hejuru.

Byongeye kandi, abantu barwaye XP bafite ibyago byinshi byo kurwara ibisebe by'uruhu byitwa actinic keratoses, bishobora kuba kanseri .

Ibimenyetso by'amaso

Akenshi, abantu barwaye XP bashobora kugira ibimenyetso by'amaso mbere y'imyaka 10 :

• Amaso yumye.
• Kugabanuka kw'amaso/gucika kw'amaso.
• Kubyimba k'ijisho ry'umuyoboro w'amaso (Keratite).
• Kutagira ubwiza mu jisho ryawe - Koreya idakira: Ibi bivuze ko igice cy'ijisho gisa n'indorerwamo kiba gifite ibicu.
• Kumenya urumuri (Photophobia): Kugorwa no kwihanganira urumuri ruke.
• Kubura kw'ingohe.

Uko igihe kigenda gihita, ibi bimenyetso bishobora gutuma umuntu atabona neza, ndetse akanahuma . Abantu barwaye XP nabo bashobora kurwara kanseri y'amaso .

Ibimenyetso by'imitsi

XP ishobora no kugira ingaruka ku mitsi yawe. Abantu bagera kuri kimwe cya kane barwaye XP bazagira ibimenyetso bijyanye n'imitsi. Ingero zirimo:

• Kunanirwa kumira - kugorwa no kumira.
• Gutakaza ubushobozi bwo gutekereza neza.
• Kudakora neza kw'imitsi (Ataxia) no gukomera (Spasticity).
• Gutakaza ubushobozi bwo gutekereza (mu bwenge) buhoro buhoro.
• Gutakaza ubushobozi bwo kumva buhoro buhoro biterwa no kwangirika kw'imitsi yo mu matwi imbere.
• Umutwe muto (Microcephaly).
• Kurema kw'imitsi y'ijwi.

Impuguke zizera ko ibi bimenyetso biterwa no kwangirika kw'uturemangingo tw'imitsi mu bwonko.

Impamvu yo kurema (XP) ni iyihe?

Nkuko twabivuze mbere, Xeroderma Pigmentosum ni indwara iterwa n’uturemangingo . Ibi bivuze ko iyi ndwara iterwa n’impinduka zidasanzwe (mutations) ziba mu turemangingo mu mubiri wacu. Izi mpinduka mu turemangingo zishobora kuragwa na nyoko, so, cyangwa bombi. Muri make, biterwa n’intege nke mu turemangingo dufasha uruhu rwacu gusana ibyangiritse biterwa n’imirasire ya UV.

Namenya nte ko mfite (XP)?

Muganga wawe ashobora gukeka ko ufite XP hashingiwe ku bimenyetso byawe. Kugira ngo yemeze ko hari icyo ukeka, azagupima amaraso . Iki gipimo cy'amaraso gisuzuma impinduka mu ngirabuzimafatizo zitera Xeroderma Pigmentosum.

Ese hari umuti wuzuye wa (XP)?

Ikibabaje ni uko nta muti uhari wa Xeroderma Pigmentosum. Ariko, muganga wawe ashobora kukugira inama yo kugabanya ibimenyetso no koroshya ubuzima bwawe:

• Ibitonyanga by'amaso: Ibitonyanga by'amaso bishobora gutangwa kugira ngo bigabanye ububyimbirwe bw'ijisho ry'umweru.
• Ibikoresho byo kumva: Iyo habayeho ikibazo cyo kumva, ushobora guhabwa ibikoresho byo kumva. Mu bihe bimwe na bimwe bikomeye , ushobora no guhabwa ibikoresho byo mu bwoko bwa cochlear implants .
• Kubagwa: Iyo urwaye kanseri y'uruhu, ushobora kubagwa kugira ngo uyikureho. Cyangwa ushobora kubagwa kugira ngo uvure indwara zimwe na zimwe z'amaso, nko kunanuka kw'amaso (ptosis) cyangwa ibibazo by'umweru w'ijisho. Mu bihe bimwe na bimwe bikomeye , bishobora kuba ngombwa ko utera cornea .
• Inyongeramusaruro za Vitamine D:Abantu benshi babona vitamine D mu mirasire y'izuba n'ibiribwa. Abantu barwaye XP bagomba kwirinda imirasire y'izuba hafi ya yose, bityo bakaba bagomba gufata inyongeramusaruro ya vitamine D.

Ese XP ishobora kwirindwa?

Kubera ko XP ari indwara y’uturemangingo, nta buryo bwo kuyikumira . Niba muganga wawe akeka ko ufite ihinduka ry’uturemangingo ritera XP, ushobora gupimwa uturemangingo .

Ikizamini cy’uturemangingo gishobora kukwereka niba ufite ihinduka ry’uturemangingo. Umujyanama mu by’uturemangingo azagusobanurira ibisubizo, ingaruka zishobora kubaho, n’amahirwe yo kubyara umwana ufite XP.

Ni iki ukwiye kwitaho mu gihe ubana na (XP)?

Niba urwaye Xeroderma Pigmentosum, hari ibintu bike ugomba kwitaho kugira ngo ukomeze kugira ubuzima bwiza muri rusange. Ibi ni byo bintu by'ingenzi cyane:

• Kurinda izuba: Iyi ni intambwe y'ingenzi cyane mu gucunga XP. Ni ngombwa kurinda uruhu rwawe imirasire ya UV.
• Ambara imyenda irinda izuba . Ibi bivuze imyenda y'amaboko maremare, ipantaro ndende, amasogisi n'ingofero.
• Ambara indorerwamo z'izuba zirinda imirasire y'izuba .
• Koresha amavuta yo kwisiga afite imiterere miremire ya SPF 35+ cyangwa irenga buri munsi. Nubwo byaba bisa nkaho bidacana izuba, imirasire ya UV irashobora kugera mu bicu.
• Impuguke zitanga inama yo gukoresha icyuma gipima urumuri rwa UV kugira ngo umenye aho ibidukikije byawe bihura cyane n'imirasire ya UV kandi wirinde kuyikoresha. Amatara amwe n'amwe yo mu nzu yawe ashobora no gusohora imirasire ya UV, bityo rero menya ibyo.

• Gusuzuma amaso: Jyana na muganga w'amaso kugira ngo agusuzumishe amaso buri gihe. Azagusuzumisha ibintu nk'amaso afite ikibyimba n'amaso abyimbye. Suzuma amaso yawe nibura rimwe mu mwaka, cyangwa kenshi nk'uko muganga agusaba.

• Gusuzuma uruhu: Jyana na muganga w'uruhu buri mezi 6 kugeza kuri 12, cyangwa kenshi nk'uko muganga agusaba. Bazasuzuma ibimenyetso bya kanseri cyangwa uduheri dushobora gutera kanseri. Mu gihe uri kwa muganga, suzuma uruhu rwawe nibura rimwe mu kwezi . Niba ubonye utudomo dushya cyangwa utubyimba, jya ubona muganga w'uruhu ako kanya.

• Ubuvuzi bw'indwara z'imitsi: Abantu bafite (XP) bagomba kubonana n'inzobere mu ndwara z'imitsi.Ugomba guhura nabo buri gihe kugira ngo urebe uko bamerewe, uko bumva, n'ibindi. Niba muganga abonye impinduka muri izi ngingo, azabasaba kuvura kugira ngo bagenzure cyangwa bagabanye uko ikibazo kigenda gikomeza kwiyongera.

Wibuke ko ibi byose ari ukugira ngo wirinde. Iyo ukurikije ibi bintu neza, ushobora kubaho ubuzima bwiza nubwo waba ufite (XP).

Ni iki wavuga ku buzima bw'umuntu ufite (XP)?

Imyaka umuntu abayeho iratandukanye bitewe n'umuntu. Kenshi na kenshi, kanseri y'uruhu ishobora kumenyekana akiri muto cyane, ibi bikaba bishobora kugabanya igihe cyo kubaho. Ariko, gufata ingamba zo kwirinda kwangirika k'uruhu bitewe n'izuba kuva akiri muto bishobora kongera amahirwe yo kubaho igihe kirekire . Kubwibyo, ni ngombwa cyane gukurikiza ingamba z'umutekano zavuzwe haruguru.

Ibibazo byo kubaza muganga wawe

Niba wowe cyangwa umwana wawe afite Xeroderma Pigmentosum, cyangwa niba ukeka ko uyifite, ushobora kubaza muganga wawe ibi bibazo:

• Ni iki nakora kugira ngo ngire ibyago byo kurwara kanseri y'uruhu?
• Ni ubuhe bwoko bw'isuzuma rya kanseri rikwiye gukorwa?
• Ni ibihe bimenyetso bya mbere bya kanseri y'uruhu?
• Ni gute iyi ndwara izagira ingaruka ku bandi bagize umuryango wanjye?
• Ese nkwiye gutekereza ku gupima imiterere y'uturemangingo?
• Ni amahirwe angahe yo kubyara undi mwana ufite (Xeroderma Pigmentosum)?

Amaherezo, ibintu byo kwibuka

Yego, rero indwara twavuzeho (Xeroderma Pigmentosum - XP) ni indwara idakunze kugaragara, iterwa n'uturemangingo. Ikintu nyamukuru kiyiranga ni ukurwara cyane imirasire ya UV. Abantu benshi banagira ibibazo by'imikurire y'amaso n'imitsi. Niba ufite (XP), ugomba kwirinda imirasire y'izuba ihagije, ni ukuvuga imirasire ya UV, uko bishoboka kose . Kurinda uruhu rwawe izuba no kwipimisha kanseri y'uruhu buri gihe ni bwo buryo bwiza bwo kugumana ubuzima bwiza.

Ndizera ko aya makuru azagufasha. Niba ufite ikibazo icyo ari cyo cyose, ntutindiganye kubaza muganga wawe. Azagufasha.

Xeroderma Pigmentosum, XP, indwara z'uruhu, indwara z'uturemangingo, ubushobozi bwo kunyura mu zuba, kanseri y'uruhu, imirasire ya UV